1997 Partnerships for Networked Consumer Health Information Conference
Summaries of Plenary Sessions and Breakout Sessions
Redefining the Roles of Consumer and Patients
Tuesday, April 15
11:15 - 12:15 PM
Moderator: Molly Mettler, MSW, Senior Vice President, Healthwise, Inc.
Respondent: Samantha Scolamiero, Creator of the Brain Tumor Mailing List
Respondent: Loren Buhle, Jr., PhD, Associate Director of Information Management, Smith Kline Beecham, Creator of OncoLink
Respondent: James S. Gordon, MD, Director, Center for Mind-Body Medicine
Statement of the Subject
The trend toward patient access to medical information was inevitable and it’s not going to be reversed unless we burn up the globe. Roy Schwarz, MD, American Medical Assn.
The culture of health care--its roles, idioms, and attitudes--is being transformed by the emergence of proactive, progressive, and empowered health care consumers. These days, the passive patient is passed over; the autocratic doctor is archaic. In the emerging culture, the patient is accepted as a primary provider of care, and the provider is identified as a partner, rather than simply a purveyor, of care.
There are new incentives and technologies emerging for consumers to manage their own health care, both at home in caring for themselves and their loved ones, in partnerships with their physicians, and in support of other people who are coping with the same problem. However, the technology is secondary. What brings patients and providers together is credible information, a willingness to work together, and a belief that both patient and provider input is necessary for the practice of good medicine.
We need to reinvent the consumer’s role in health care, and by doing so, create a more effective, responsive and compassionate health care system.
Key Issues
Access: While it is true that the numbers of Web-surfers and cybercruisers are increasing by leaps and bounds, significant portions of our population remain unconnected to the world of consumer health informatics and are likely to remain so until very simple and inexpensive technologies become more mainstream. How do under-served consumers without easy access to networked consumer health information get to it? And for those with technological ties, how do we construct databases that easily and readily get consumers to the information they need?
Quality: Sifting through the Net for consumer health information can be likened to hunting for wild mushrooms. If you know what you’re looking for, and/or have a trusted guide, you can reap genuine benefits. However, it’s easy to be led astray or misinformed, sometimes with toxic effect. Who ensures quality? Who or what will be the trusted guide? Can consumers and providers agree on what constitutes quality information? As more players and payers, such as managed care organizations and pharmaceutical companies, develop consumer health information, how concerned do consumers need to be about credibility bias?
Development and ownership: Self-help and support groups, self-help information, and mail lists are largely developed by concerned consumers who are personally grappling with a health issue. What roles should consumers play in the development and dissemination of networked health information? Should consumers impact the technology and information under development? When and where should consumer autonomy be paramount?
Value to both consumers and providers: From the consumers’ point of view, valuable networked consumer health information will be easy to use and understand, give enough quality information to help in decision making, and point to related information. From the physicians’ perspective, acceptable CHI will ensure the quality of the information, help retain professional autonomy and professional satisfaction, as well as contribute to patient satisfaction. Can both masters be served? Where do these needs intersect, and where do they diverge? Are physicians ready to embrace fully informed and opinionated consumers?
Getting ahead of the curve: consumer desire vs. evidence-based outcomes: Many consumers thirst for information and remedies for ills that beleaguer them. However, some treatments and therapies discussed in depth by consumers may as yet be experimental, and/or unsubstantiated by medical research. Whether it is concerning complementary therapies, new drug trials, or the latest in diagnostic testing, should there be any limits to satisfying consumer desire? Who should decide? Does a more consumer-oriented health care system deliver on its promise of a more effective health care system, or will there be unintended consequences?
Roles, Responsibilities, and Priorities
Consumers as advocates: Creating market pull for quality, unbiased consumer health information with relevance to the individual patient.
- Sharing the patient’s perspective and thereby adding a much needed dimension to medical care.
- Driving critical research issues by holding government and research organizations’ feet to the fire.
- Reinventing the consumer’s role within the health care system.
Consumers as health care producers and decision makers: Actively participating in personal and family health through self-care, patient-physician partnerships, and shared medical decision making. Insisting that patient preference and values be factored into medical decision making to help increase both the appropriateness and relevance of the care.
Consumers as entrepreneurs and innovators: Developing and maintaining some of the very best CHI databases.
- Developing the mail lists, chat rooms, bulletin boards, and support groups which promote people to-people health care. Proactively meeting consumer demand for information.
Next Steps
- Walk the talk. Accept and recognize that the role of the health care consumer has changed. Unleash and support consumer empowerment. Give consumers and patients a voice and opportunities to develop and disseminate consumer health informatics.
- Consider how all players (consumers, providers, and payers) might walk the middle path by striking a seemly balance between consumer desire and innovation, evidence-based outcomes widely accepted by health professionals, and payers’ willingness to pay. Or, conversely, agree to disagree.
- Develop and embrace quality standards (including guidelines for unbiased information) in CHI. Otherwise, caveat emptor.
Collaborate and connect. Make government-owned or controlled content available to all CHI users and sources.
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